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J Hosp Palliat Nurs. Author manuscript; available in PMC 2017 April 01. Published in final edited form as: J Hosp Palliat Nurs. 2016 April 1; 18(2): 124–130. doi:10.1097/NJH.0000000000000222.
Communication with Residents and Families in Nursing Homes at the End of Life Samantha Johnson, BSN, RN and The University of Kansas Hospital, 3901 Rainbow Blvd. MSN 2018, Kansas City, Kansas 66160, Phone: 913-588-1552, Fax: 913-945-5095
Author Manuscript
Marjorie J. Bott, PhD, RN Associate Professor and Associate Dean, Research, University of Kansas School of Nursing Samantha Johnson: [email protected]
Abstract Communication with residents and their families is important to ensure that the end-of-life experience is in accordance with resident’s wishes. A secondary analysis was conducted to determine: (a) who should communicate with the resident/family about death and dying; (b) when communication should occur around death and dying, obtaining a “DNR” order, and obtaining a hospice referral; and (c) what differences exist in communication about death and dying between Registered Nurses (RNs), Licensed Practical Nurses (LPNs), and unlicensed staff.
Author Manuscript
Greater than 90% of staff (N=2,191) reported that the physician or social worker should communicate about death and dying with residents/families, but only 53% thought that direct care staff should talk with them. Weighted scores for “When communication should occur about death and dying and obtaining a ‘DNR’ Order” revealed significantly (p < .01) lower scores for unlicensed staff than RNs and LPNS (i.e., licensed staff), indicating that licensed staff were more likely to initiate conversations on admission or at the care-planning meeting, or when the resident’s family requested it. No differences were found between staff on communication about obtaining a hospice referral. The identified gaps in perception about who should be communicating can assist in developing appropriate interventions that need future testing. The potential for training regarding communication strategies and techniques could lead to higher satisfaction with end-of-life care for residents and their families.
Author Manuscript
Keywords Communication; Terminal Care; Interdisciplinary Communication; Nursing; Nursing Home
Background With the number of elders increasing who are admitted to nursing homes for the final days of their lives, death is occurring more often in nursing homes. Currently, 25% of all Americans die in nursing homes, and this number is predicted to rise to 40% by 20201. While communication has been identified by families, residents, and health care providers as
Johnson and Bott
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an essential factor in end-of-life care2–4, little research describes communication among the nurse, patient, and family at the end of life5. There also is a gap in the literature regarding information about direct care nursing staff (i.e., Registered Nurses [RNs], Licensed Practical Nurses [LPNs], and nursing assistants) perceptions about when communication should occur, especially related to “Do Not Resuscitate (DNR)” orders, hospice referrals, and who is responsible for communication about end-of-life care.
Author Manuscript
Family members of deceased residents identify communication as essential when talking about what makes a good death6–8. In these studies, open communication between healthcare workers, family members, and residents had a strong, positive correlation with high satisfaction with end-of-life care for the resident. However, despite the need for good communication, direct care staff, nursing home residents, and family have identified many barriers that resulted in missed conversations. These include: (a) perceived difficultly in having conversations related to end-of-life care, (b) feelings that staff did not have enough knowledge for the conversation, (c) assumptions that the preferences were already known, (d) presence of an advanced directive, and (e) inquiries never occurring9. Livingston identified another weakness in that the direct care staff (e.g., RNs, LPNs, and nursing assistants) and physicians did not see themselves as a team; this led to poor communication with each other and the resident’s family10. Due to the limited number of systematic approaches to elicit and communicate information about resident life preferences, many staff members may be uneducated about how to handle the communication leading to residents’ wishes and preferences not being fulfilled11. These missed opportunities for communication can affect progression of patient’s care.
Author Manuscript
Because direct care staff provide substantial care to residents at their end of life, more research is needed to understand their perceptions about communication. Additionally, exploration of licensed (i.e., RNs and LPNs) and unlicensed staff perceptions of communication about death and the end-of-life processes could enhance understanding and contribute to interventions that could lead to improved and more satisfactory experiences for residents and their families during the resident’s dying process.
Author Manuscript
The purpose of this secondary analysis is to identify communication used by direct care staff when residents and their families are preparing for the end of life. The following three research questions were explored: (a) Who communicates with the resident and family members about death and dying in the nursing home? (b) When should communication occur about death and dying, obtaining a “DNR” order, and obtaining a hospice referral? and (c) Are there differences in communication about death and dying, obtaining a “DNR” order, and obtaining a hospice referral between Registered Nurses (RNs), Licensed Practical Nurses (LPNs), and unlicensed staff (certified nursing assistants [CNAs], certified medication assistants [CMAs], and restorative aides)?
J Hosp Palliat Nurs. Author manuscript; available in PMC 2017 April 01.
Johnson and Bott
Page 3
Author Manuscript
Methods Design A descriptive, secondary analysis of data from the National Institute of Nursing Research (NINR)-funded study, “Impact of Quality End-of-Life Care in Nursing Homes,” was used for this study12. Using Unruh and Wan’s expanded structure, process, and outcomes systems framework13, the primary study was used to examine the quality of care, life, and death in nursing homes. This study focuses on the direct care staff perceptions of communication with family and residents at the end of life. Setting and Sample
Author Manuscript
One hundred nursing homes from two Midwestern states randomly were selected from 180 facilities that met the criteria for enrollment in the primary study; 85 facilities agreed to participate and completed the study. The nursing homes had an average bed size of 89 (Range= 39–254), about two-thirds (63%) were rural, and more than half (53%) were forprofit (non-profit = 38% and government-owned = 10%). Within the nursing homes, the sample consisted of 2,191 direct care staff (see Roles in Table 1). The original data included 2,932 staff members, but was reduced to 2,191 after non-nursing personnel and non-direct care staff members were eliminated. Procedures
Author Manuscript
Nursing home administrators were informed about the study and consent was obtained for their participation. Direct care staff members working in the nursing homes consented and completed study questionnaires in person during on-site visits by the research team. Although data were collected at two time points (the beginning of the study and the end of the study) only end-of-study data are reported here. Data were de-identified for use by the researcher and determination of non-human subjects research was made by a Midwestern academic medical center. Measures Survey questions—For this study, four items were used from one subconstruct, Planning/ Intervention, of the Palliative Care Practice construct of the Palliative Care Process Measure (PCPM). Reliability and validity was established for the PCPM by Thompson and colleagues14. After being presented with a case study of a dying resident, the direct care staff were asked to respond to survey questions related to the case study that made up the four items representing the Planning/Intervention subconstruct.
Author Manuscript
Responses were yes (1) or no (2) to the first survey item, “Who will talk about death and dying with resident’s family member?” for each of the following care givers: (a) any direct care staff, including CNAs, (b) resident’s physician, (c) social worker, (d) charge nurse, (d) director of nursing, (e) chaplain, or (f) others. No additional information was solicited for the other category. Table 2 summarizes the times (varied by question) when responses (never, sometimes, often, and always) were asked for the next three survey items: (a) When would you communicate
J Hosp Palliat Nurs. Author manuscript; available in PMC 2017 April 01.
Johnson and Bott
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Author Manuscript
about death and dying? (b) When would you communicate about obtaining a “DNR” order? and (c) When would you communicate about obtaining a hospice referral? Weights from zero to five were assigned for each response option (never to always) for each of the times listed for each survey question (see Table 2). Scores were created by summing across the weights assigned for each of the times within each survey item. Summed scores ranges for the three survey items were: 0 to 12, 0 to 10, and 0 to 14, respectively, for each item. Demographic data—Table 1 presents the categories for each of the demographic characteristics that were reported by direct care staff. Information was collected about: (a) age categories; (b) gender; (c) race; (d) highest level of education; (e) number of years in the current job title; and (f) number of years working in the nursing home. Data Analysis
Author Manuscript Author Manuscript
Data were analyzed using IBM Statistics SPSS Version 22.0. The first question, “Who communicates with the resident and family members about death and dying in the nursing home?” and the second question, “When should communication occur about death and dying, obtaining a “Do Not Resuscitate” order, or obtaining a hospice referral?” were analyzed using descriptive statistics. The third question, “Are there differences in communication about death and dying, obtaining a “DNR” order, and obtaining a hospice referral between Registered Nurses (RNs), Licensed Practical Nurses (LPNs), and unlicensed staff (certified nursing assistants [CNAs], certified medication assistants [CMAs], and restorative aides)?” was analyzed using ANOVA to test for differences between the three groups (RNs, LPNs, and unlicensed staff) on the weighted summed scores for each of the three items from the Planning/Intervention subconstruct of the PCPM. Assumptions for violations of homogeneity of variance were tested using Levine’s test; follow-up tests were conducted using Dunnett’s T3 test to determine group differences following a significant (p
J Hosp Palliat Nurs. Author manuscript; available in PMC 2017 April 01. Published in final edited form as: J Hosp Palliat Nurs. 2016 April 1; 18(2): 124–130. doi:10.1097/NJH.0000000000000222.
Communication with Residents and Families in Nursing Homes at the End of Life Samantha Johnson, BSN, RN and The University of Kansas Hospital, 3901 Rainbow Blvd. MSN 2018, Kansas City, Kansas 66160, Phone: 913-588-1552, Fax: 913-945-5095
Author Manuscript
Marjorie J. Bott, PhD, RN Associate Professor and Associate Dean, Research, University of Kansas School of Nursing Samantha Johnson: [email protected]
Abstract Communication with residents and their families is important to ensure that the end-of-life experience is in accordance with resident’s wishes. A secondary analysis was conducted to determine: (a) who should communicate with the resident/family about death and dying; (b) when communication should occur around death and dying, obtaining a “DNR” order, and obtaining a hospice referral; and (c) what differences exist in communication about death and dying between Registered Nurses (RNs), Licensed Practical Nurses (LPNs), and unlicensed staff.
Author Manuscript
Greater than 90% of staff (N=2,191) reported that the physician or social worker should communicate about death and dying with residents/families, but only 53% thought that direct care staff should talk with them. Weighted scores for “When communication should occur about death and dying and obtaining a ‘DNR’ Order” revealed significantly (p < .01) lower scores for unlicensed staff than RNs and LPNS (i.e., licensed staff), indicating that licensed staff were more likely to initiate conversations on admission or at the care-planning meeting, or when the resident’s family requested it. No differences were found between staff on communication about obtaining a hospice referral. The identified gaps in perception about who should be communicating can assist in developing appropriate interventions that need future testing. The potential for training regarding communication strategies and techniques could lead to higher satisfaction with end-of-life care for residents and their families.
Author Manuscript
Keywords Communication; Terminal Care; Interdisciplinary Communication; Nursing; Nursing Home
Background With the number of elders increasing who are admitted to nursing homes for the final days of their lives, death is occurring more often in nursing homes. Currently, 25% of all Americans die in nursing homes, and this number is predicted to rise to 40% by 20201. While communication has been identified by families, residents, and health care providers as
Johnson and Bott
Page 2
Author Manuscript
an essential factor in end-of-life care2–4, little research describes communication among the nurse, patient, and family at the end of life5. There also is a gap in the literature regarding information about direct care nursing staff (i.e., Registered Nurses [RNs], Licensed Practical Nurses [LPNs], and nursing assistants) perceptions about when communication should occur, especially related to “Do Not Resuscitate (DNR)” orders, hospice referrals, and who is responsible for communication about end-of-life care.
Author Manuscript
Family members of deceased residents identify communication as essential when talking about what makes a good death6–8. In these studies, open communication between healthcare workers, family members, and residents had a strong, positive correlation with high satisfaction with end-of-life care for the resident. However, despite the need for good communication, direct care staff, nursing home residents, and family have identified many barriers that resulted in missed conversations. These include: (a) perceived difficultly in having conversations related to end-of-life care, (b) feelings that staff did not have enough knowledge for the conversation, (c) assumptions that the preferences were already known, (d) presence of an advanced directive, and (e) inquiries never occurring9. Livingston identified another weakness in that the direct care staff (e.g., RNs, LPNs, and nursing assistants) and physicians did not see themselves as a team; this led to poor communication with each other and the resident’s family10. Due to the limited number of systematic approaches to elicit and communicate information about resident life preferences, many staff members may be uneducated about how to handle the communication leading to residents’ wishes and preferences not being fulfilled11. These missed opportunities for communication can affect progression of patient’s care.
Author Manuscript
Because direct care staff provide substantial care to residents at their end of life, more research is needed to understand their perceptions about communication. Additionally, exploration of licensed (i.e., RNs and LPNs) and unlicensed staff perceptions of communication about death and the end-of-life processes could enhance understanding and contribute to interventions that could lead to improved and more satisfactory experiences for residents and their families during the resident’s dying process.
Author Manuscript
The purpose of this secondary analysis is to identify communication used by direct care staff when residents and their families are preparing for the end of life. The following three research questions were explored: (a) Who communicates with the resident and family members about death and dying in the nursing home? (b) When should communication occur about death and dying, obtaining a “DNR” order, and obtaining a hospice referral? and (c) Are there differences in communication about death and dying, obtaining a “DNR” order, and obtaining a hospice referral between Registered Nurses (RNs), Licensed Practical Nurses (LPNs), and unlicensed staff (certified nursing assistants [CNAs], certified medication assistants [CMAs], and restorative aides)?
J Hosp Palliat Nurs. Author manuscript; available in PMC 2017 April 01.
Johnson and Bott
Page 3
Author Manuscript
Methods Design A descriptive, secondary analysis of data from the National Institute of Nursing Research (NINR)-funded study, “Impact of Quality End-of-Life Care in Nursing Homes,” was used for this study12. Using Unruh and Wan’s expanded structure, process, and outcomes systems framework13, the primary study was used to examine the quality of care, life, and death in nursing homes. This study focuses on the direct care staff perceptions of communication with family and residents at the end of life. Setting and Sample
Author Manuscript
One hundred nursing homes from two Midwestern states randomly were selected from 180 facilities that met the criteria for enrollment in the primary study; 85 facilities agreed to participate and completed the study. The nursing homes had an average bed size of 89 (Range= 39–254), about two-thirds (63%) were rural, and more than half (53%) were forprofit (non-profit = 38% and government-owned = 10%). Within the nursing homes, the sample consisted of 2,191 direct care staff (see Roles in Table 1). The original data included 2,932 staff members, but was reduced to 2,191 after non-nursing personnel and non-direct care staff members were eliminated. Procedures
Author Manuscript
Nursing home administrators were informed about the study and consent was obtained for their participation. Direct care staff members working in the nursing homes consented and completed study questionnaires in person during on-site visits by the research team. Although data were collected at two time points (the beginning of the study and the end of the study) only end-of-study data are reported here. Data were de-identified for use by the researcher and determination of non-human subjects research was made by a Midwestern academic medical center. Measures Survey questions—For this study, four items were used from one subconstruct, Planning/ Intervention, of the Palliative Care Practice construct of the Palliative Care Process Measure (PCPM). Reliability and validity was established for the PCPM by Thompson and colleagues14. After being presented with a case study of a dying resident, the direct care staff were asked to respond to survey questions related to the case study that made up the four items representing the Planning/Intervention subconstruct.
Author Manuscript
Responses were yes (1) or no (2) to the first survey item, “Who will talk about death and dying with resident’s family member?” for each of the following care givers: (a) any direct care staff, including CNAs, (b) resident’s physician, (c) social worker, (d) charge nurse, (d) director of nursing, (e) chaplain, or (f) others. No additional information was solicited for the other category. Table 2 summarizes the times (varied by question) when responses (never, sometimes, often, and always) were asked for the next three survey items: (a) When would you communicate
J Hosp Palliat Nurs. Author manuscript; available in PMC 2017 April 01.
Johnson and Bott
Page 4
Author Manuscript
about death and dying? (b) When would you communicate about obtaining a “DNR” order? and (c) When would you communicate about obtaining a hospice referral? Weights from zero to five were assigned for each response option (never to always) for each of the times listed for each survey question (see Table 2). Scores were created by summing across the weights assigned for each of the times within each survey item. Summed scores ranges for the three survey items were: 0 to 12, 0 to 10, and 0 to 14, respectively, for each item. Demographic data—Table 1 presents the categories for each of the demographic characteristics that were reported by direct care staff. Information was collected about: (a) age categories; (b) gender; (c) race; (d) highest level of education; (e) number of years in the current job title; and (f) number of years working in the nursing home. Data Analysis
Author Manuscript Author Manuscript
Data were analyzed using IBM Statistics SPSS Version 22.0. The first question, “Who communicates with the resident and family members about death and dying in the nursing home?” and the second question, “When should communication occur about death and dying, obtaining a “Do Not Resuscitate” order, or obtaining a hospice referral?” were analyzed using descriptive statistics. The third question, “Are there differences in communication about death and dying, obtaining a “DNR” order, and obtaining a hospice referral between Registered Nurses (RNs), Licensed Practical Nurses (LPNs), and unlicensed staff (certified nursing assistants [CNAs], certified medication assistants [CMAs], and restorative aides)?” was analyzed using ANOVA to test for differences between the three groups (RNs, LPNs, and unlicensed staff) on the weighted summed scores for each of the three items from the Planning/Intervention subconstruct of the PCPM. Assumptions for violations of homogeneity of variance were tested using Levine’s test; follow-up tests were conducted using Dunnett’s T3 test to determine group differences following a significant (p
